Full download test bank at ebookmeta.

com

Communicating Clearly about Medicines Proceedings

of a Workshop 1st Edition And Medicine Engineering
National Academies Of Sciences
For dowload this book click LINK or Button below

https://ebookmeta.com/product/communicating-
clearly-about-medicines-proceedings-of-a-
workshop-1st-edition-and-medicine-engineering-
national-academies-of-sciences/
OR CLICK BUTTON

DOWLOAD EBOOK

Download More ebooks from https://ebookmeta.com

More products digital (pdf, epub, mobi) instant
download maybe you interests ...

Neuroscience Trials of the Future Proceedings of a

Workshop 1st Edition And Medicine Engineering National
Academies Of Sciences

https://ebookmeta.com/product/neuroscience-trials-of-the-future-
proceedings-of-a-workshop-1st-edition-and-medicine-engineering-
national-academies-of-sciences/

Implementation of Lung Cancer Screening Proceedings of

a Workshop 1st Edition And Medicine Engineering
National Academies Of Sciences

https://ebookmeta.com/product/implementation-of-lung-cancer-
screening-proceedings-of-a-workshop-1st-edition-and-medicine-
engineering-national-academies-of-sciences/

Sustainable Diets, Food, and Nutrition: Proceedings of

a Workshop 1st Edition And Medicine Engineering
National Academies Of Sciences

https://ebookmeta.com/product/sustainable-diets-food-and-
nutrition-proceedings-of-a-workshop-1st-edition-and-medicine-
engineering-national-academies-of-sciences/

Globalization of Defense Materials and Manufacturing

Proceedings of a Workshop 1st Edition And Medicine
Engineering National Academies Of Sciences

https://ebookmeta.com/product/globalization-of-defense-materials-
and-manufacturing-proceedings-of-a-workshop-1st-edition-and-
medicine-engineering-national-academies-of-sciences/
Revisiting the Manufacturing USA Institutes:
Proceedings of a Workshop 1st Edition And Medicine
Engineering National Academies Of Sciences

https://ebookmeta.com/product/revisiting-the-manufacturing-usa-
institutes-proceedings-of-a-workshop-1st-edition-and-medicine-
engineering-national-academies-of-sciences/

Improving the American Community Survey: Proceedings of

a Workshop 1st Edition And Medicine Engineering
National Academies Of Sciences

https://ebookmeta.com/product/improving-the-american-community-
survey-proceedings-of-a-workshop-1st-edition-and-medicine-
engineering-national-academies-of-sciences/

Adaptability of the US Engineering and Technical

Workforce Proceedings of a Workshop 1st Edition And
Medicine Engineering National Academies Of Sciences

https://ebookmeta.com/product/adaptability-of-the-us-engineering-
and-technical-workforce-proceedings-of-a-workshop-1st-edition-
and-medicine-engineering-national-academies-of-sciences/

Approaches to the Development of Character Proceedings

of a Workshop 1st Edition And Medicine Engineering
National Academies Of Sciences

https://ebookmeta.com/product/approaches-to-the-development-of-
character-proceedings-of-a-workshop-1st-edition-and-medicine-
engineering-national-academies-of-sciences/

Understanding the Economics of Microbial Threats

Proceedings of a Workshop 1st Edition And Medicine
Engineering National Academies Of Sciences

https://ebookmeta.com/product/understanding-the-economics-of-
microbial-threats-proceedings-of-a-workshop-1st-edition-and-
medicine-engineering-national-academies-of-sciences/
 COMMUNICATING
CLEARLY ABOUT
MEDICINES

PROCEEDINGS OF A WORKSHOP

Joe Alper, Rapporteur

Roundtable on Health Literacy

Board on Population Health and Public Health Practice

Health and Medicine Division

THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC
20001

This activity was supported by contracts between the National Academy of

Sciences and AbbVie Inc.; Aetna Foundation; Agency for Healthcare Research and
Quality (HHSP23337024); American Dental Association; Bristol-Myers Squibb; East
Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health
Literacy Media; Health Literacy Partners; Health Resources and Services
Administration (HHSH25034011T); Humana; Institute for Healthcare
Advancement; Merck Sharp & Dohme Corp.; National Institutes of Health
(HHSN26300054); National Library of Medicine; Northwell Health; Office of
Disease Prevention and Health Promotion (HHSP23337043); and UnitedHealth
Group. Any opinions, findings, conclusions, or recommendations expressed in this
publication do not necessarily reflect the views of any organization or agency that
provided support for the project.

International Standard Book Number-13: 978-0-309-46185-6

International Standard Book Number-10: 0-309-46185-5
Digital Object Identifier: https://doi.org/10.17226/24814
Epub ISBN: 978-0-309-46188-7

Additional copies of this publication are available for sale from the National
Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800)
624-6242 or (202) 334-3313; http://www.nap.edu.

Copyright 2017 by the National Academy of Sciences. All rights reserved.

Printed in the United States of America.

Suggested citation: National Academies of Sciences, Engineering, and Medicine.

2017. Communicating clearly about medicines: Proceedings of a workshop.
Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/248
14.
The National Academy of Sciences was established in 1863 by
an Act of Congress, signed by President Lincoln, as a private,
nongovernmental institution to advise the nation on issues related to
science and technology. Members are elected by their peers for
outstanding contributions to research. Dr. Marcia McNutt is
president.

The National Academy of Engineering was established in 1964

under the charter of the National Academy of Sciences to bring the
practices of engineering to advising the nation. Members are elected
by their peers for extraordinary contributions to engineering. Dr. C.
D. Mote, Jr., is president.

The National Academy of Medicine (formerly the Institute of

Medicine) was established in 1970 under the charter of the National
Academy of Sciences to advise the nation on medical and health
issues. Members are elected by their peers for distinguished
contributions to medicine and health. Dr. Victor J. Dzau is president.

The three Academies work together as the National Academies of

Sciences, Engineering, and Medicine to provide independent,
objective analysis and advice to the nation and conduct other
activities to solve complex problems and inform public policy
decisions. The National Academies also encourage education and
research, recognize outstanding contributions to knowledge, and
increase public understanding in matters of science, engineering,
and medicine.

Learn more about the National Academies of Sciences, Engineering,

and Medicine at www.nationalacademies.org.
Consensus Study Reports published by the National Academies of
Sciences, Engineering, and Medicine document the evidence-based
consensus on the study’s statement of task by an authoring
committee of experts. Reports typically include findings, conclusions,
and recommendations based on information gathered by the
committee and the committee’s deliberations. Each report has been
subjected to a rigorous and independent peer-review process and it
represents the position of the National Academies on the statement
of task.

Proceedings published by the National Academies of Sciences,

Engineering, and Medicine chronicle the presentations and
discussions at a workshop, symposium, or other event convened by
the National Academies. The statements and opinions contained in
proceedings are those of the participants and are not endorsed by
other participants, the planning committee, or the National
Academies.

For information about other products and activities of the National

Academies, please visit www.nationalacademies.org/about/whatwed
o.
 PLANNING COMMITTEE ON
COMMUNICATING CLEARLY ABOUT
MEDICINE1

IRENE Z. CHAN, Deputy Director, Division of Medication Error

Prevention and Analysis, U.S. Food and Drug Administration
TERRY DAVIS, Professor of Medicine and Pediatrics, Louisiana
State University Health Sciences Center
JAMES (JAY) DUHIG, Head, Risk Communication and Behavioral
Systems, Office of Patient Safety, AbbVie Inc.
JOAN GUTHRIE MEDLEN, Training Development Specialist, Office
of Adult Abuse Prevention and Investigations, Oregon Department
of Human Services; and President, Medlen Consulting, LLC
LAURIE MYERS, Global Health Literacy Director, Merck Sharp &
Dohme Corp.
H. SHONNA YIN, Assistant Professor of Pediatrics and Population
Health, New York University School of Medicine and Bellevue
Hospital Center

__________________
1 The National Academies of Sciences, Engineering, and Medicine’s planning
committees are solely responsible for organizing the workshop, identifying topics,
and choosing speakers. The responsibility for the published Proceedings of a
Workshop rests with the workshop rapporteur and the institution.
 ROUNDTABLE ON HEALTH LITERACY1

BERNARD ROSOF (Chair), Chief Executive Officer, Quality in

Healthcare Advisory Group LLC
MARIN P. ALLEN, Deputy Associate Director for Communications
and Public Liaison and Director of Public Information, National
Institutes of Health
WILMA ALVARADO-LITTLE, Principal and Founder, Alvarado-Little
Consulting, LLC
SUZANNE BAKKEN, Alumni Professor of Nursing and Professor of
Biomedical Informatics, Columbia University
CINDY BRACH, Senior Health Policy Researcher, Agency for
Healthcare Research and Quality
GEM DAUS, Public Health Analyst, Office of Health Equity, Health
Resources and Services Administration
TERRY DAVIS, Professor of Medicine and Pediatrics, Louisiana
State University Health Sciences Center
CHRISTOPHER DEZII, Director, Healthcare Quality and
Performance Measures, Bristol-Myers Squibb
JENNIFER DILLAHA, Medical Director for Immunizations, Medical
Advisor, Health Literacy and Communication, Arkansas Department
of Health
JAMES (JAY) DUHIG, Head, Risk Communication and Behavioral
Systems, Office of Patient Safety, AbbVie Inc.
ALICIA FERNANDEZ, Professor of Clinical Medicine, Department of
Medicine, Division of General Internal Medicine, University of
California, San Francisco
LAURIE FRANCIS, Senior Director of Clinic Operations and Quality,
Oregon Primary Care Association
LORI HALL, Director, Health Literacy, U.S. Medical Strategy and
Operations, Lilly USA, LLC
LINDA HARRIS, Director, Division of Health Communication and
ehealth Team, U.S. Department of Health and Human Services
BETSY L. HUMPHREYS, Acting Director, National Library of
Medicine
LAURIE MYERS, Global Health Literacy Director, Merck Sharp &
Dohme Corp.
CATINA O’LEARY, President and Chief Executive Officer, Health
Literacy Media
MARYLYNN OSTROWSKI, Executive Director, Aetna Foundation
MICHAEL PAASCHE-ORLOW, Professor of Medicine, Boston
University School of Medicine
TERRI ANN PARNELL, Principal and Founder, Health Literacy
Partners
KIM PARSON, Strategic Consultant, Proactive Care Strategies,
Humana
KAVITA PATEL, Managing Director for Clinical Transformation and
Delivery, The Brookings Institution
ANDREW PLEASANT, Senior Director for Health Literacy and
Research, Canyon Ranch Institute
LINDSEY A. ROBINSON, Thirteenth District Trustee, American
Dental Association
STACEY ROSEN, Associate Professor of Cardiology, Hofstra
Northwell Health School of Medicine and Vice President, Women’s
Health, The Katz Institute for Women’s Health
RIMA RUDD, Senior Lecturer on Health Literacy, Education, and
Policy, Harvard T.H. Chan School of Public Health
STEVEN RUSH, Director, Health Literacy Innovations, UnitedHealth
Group
MICHAEL VILLAIRE, Chief Executive Officer, Institute for
Healthcare Advancement
EARNESTINE WILLIS, Kellner Professor in Pediatrics, Medical
College of Wisconsin
MICHAEL WOLF, Professor, Medicine and Learning Sciences,
Associate Division Chief, Research Division of General Internal
Medicine, Feinberg School of Medicine, Northwestern University
WINSTON WONG, Medical Director, Community Benefit, Disparities
Improvement, and Quality Initiatives, Kaiser Permanente

Consultant
RUTH PARKER, Professor of Medicine, Pediatrics, and Public
Health, Emory University School of Medicine

Health and Medicine Division Staff

LYLA HERNANDEZ, Senior Program Officer
MELISSA FRENCH, Program Officer
ALEXIS WOJTOWICZ, Senior Program Assistant
ROSE MARIE MARTINEZ, Senior Board Director, Board on
Population Health and Public Health Practice

__________________
1 The National Academies of Sciences, Engineering, and Medicine’s forums and
roundtables do not issue, review, or approve individual documents. The
responsibility for the published Proceedings of a Workshop rests with the
workshop rapporteur and the institution.
 Reviewers

This Proceedings of a Workshop was reviewed in draft form by

individuals chosen for their diverse perspectives and technical
expertise. The purpose of this independent review is to provide
candid and critical comments that will assist the National Academies
of Sciences, Engineering, and Medicine in making each published
proceedings as sound as possible and to ensure that it meets the
institutional standards for quality, objectivity, evidence, and
responsiveness to the charge. The review comments and draft
manuscript remain confidential to protect the integrity of the
process.
We thank the following individuals for their review of this
proceedings:

SUZANNE BAKKEN, Columbia University

SHARON E. BARRETT, Association of Clinicians for the
Underserved
CATHRYN GUNTHER, Merck Sharp & Dohme Corp.
ALICE HOROWITZ, University of Maryland School of Public
Health

Although the reviewers listed above provided many constructive

comments and suggestions, they were not asked to endorse the
content of the proceedings nor did they see the final draft before its
release. The review of this proceedings was overseen by Hugh H.
Tilson, University of North Carolina at Chapel Hill. He was
responsible for making certain that an independent examination of
this proceedings was carried out in accordance with standards of the
National Academies and that all review comments were carefully
considered. Responsibility for the final content rests entirely with the
rapporteur and the National Academies.
 Acknowledgments

The sponsors of the National Academies of Sciences, Engineering,

and Medicine’s Roundtable on Health Literacy made it possible to
plan and conduct the workshop on communicating clearly about
medicines, which this Proceedings of a Workshop summarizes.
Federal sponsors included the Agency for Healthcare Research and
Quality, Health Resources and Services Administration, National
Institutes of Health, National Library of Medicine, and Office of
Disease Prevention and Health Promotion at the U.S. Department of
Health and Human Services. Non-federal sponsorship was provided
by AbbVie Inc.; Aetna Foundation; American Dental Association;
Bristol-Myers Squibb; East Bay Community Foundation (Kaiser
Permanente); Eli Lilly and Company; Health Literacy Media; Health
Literacy Partners; Humana; Institute for Healthcare Advancement;
Merck Sharp & Dohme Corp.; Northwell Health; and UnitedHealth
Group.
The roundtable would like to thank each of the speakers, reactors,
and panel moderators for their time and effort. Speakers, reactors,
and moderators were, in alphabetical order, Irene Chan, Donna
Horn, Ed Israelski, Brian Jack, Charles Lee, Darvece A. Monson, Dan
Morrow, Laurie Myers, Terri Ann Parnell, Bobbie Reed, Heather
Rennie, Bernard Rosof, Caleb Sexton, William Shrank, Steve Sparks,
Elisabeth Walther, Michael Wolf, and H. Shonna Yin.
 Contents

ACRONYMS AND ABBREVIATIONS

1 INTRODUCTION AND WORKSHOP OVERVIEW

Organization of the Proceedings

2 PATIENT AND CAREGIVER PERSPECTIVES

Discussion

3 APPROACHES TO HEALTH-LITERATE MEDICATION

INSTRUCTIONS
An Overview of Research on Written Communications
The Role of Human Factors Engineering
Human-Centered Design
Discussion

4 TRANSLATING RESEARCH INTO PRACTICE: CASE STUDIES

Adopting an Easy-to-Read Medication Label in Wisconsin
Including Individuals with Low Health Literacy in the Development
and Testing of Patient Labeling
Project RED: Engaging Patients in Medication Management at
Hospital Discharge
Planning for Non-English–Speaking Patients
Reactor Panel Comments
Discussion
5 EXPLORING THE FUTURE OF HEALTH-LITERATE DESIGN
Written Materials in the Digital Space
Legal Considerations in Applying Health Literacy Principles to
Written Communication
Moving Forward in Written Communications Research
Discussion

6 REFLECTIONS ON THE DAY

REFERENCES

APPENDIXES
A Workshop Agenda
B Biographical Sketches of Workshop Speakers, Moderators, and
Reactors
 Boxes and Figures

BOXES
1-1 Statement of Task

3-1 Human Factors Standards

4-1 The 11 Mutually Reinforcing Components of a Health-Literate

Discharge Program

FIGURES
3-1 Human factors core methods

4-1 A prescription label designed by focus group members

4-2 Current and working-draft redesigned labels
4-3 Patient labeling created through Merck’s new process to create
health-literate labeling
4-4 Personalized cover page of an after-hospital care plan
4-5 Medication instructions in an after-hospital care plan
4-6 Evaluation results for the medication section of the after-
hospital care plan
4-7 Appointment schedule in an after-hospital care plan
4-8 Project RED postdischarge mediation process map
4-9 A sample Polyglot Systems Meducation drug information sheet
4-10 Medication discharge instructions to improve medication
adherence
4-11 Mobile patient education for the Spiriva inhaler
4-12 Different pictograms for illustrating the same dose
4-13 A visual presentation of tapering instructions

5-1 The process/knowledge model of health literacy

5-2 An example of a Universal Medication Schedule
5-3 An electronic health record–based system that would provide
multiple opportunities for providing patients with medication
information and assistance
 Acronyms and
Abbreviations

AAMI Association for the Advancement of Medical

Instrumentation
AHRQ Agency for Healthcare Research and Quality
ANSI American National Standards Institute

EHR electronic health record

FDA U.S. Food and Drug Administration

FFS fee-for-service

HCAHPS Hospital Consumer Assessment of Healthcare

Providers and Systems
HHS U.S. Department of Health and Human Services

IEC International Electrotechnical Commission

ISO International Organization for Standardization

NVS Newest Vital Sign

PEMAT Patient Education Materials Assessment Tool

Project RED Reengineered Discharge Program

QR Quick Response
UMS Universal Medication Schedule
UPMC University of Pittsburgh Medical Center
USP U.S. Pharmacopeia
 1

Introduction and
Workshop Overview1

Research conducted over the past two decades has shown that poor
patient understanding of medication instructions is an important
contributor to the more than 1 million medication errors and adverse
drug events that lead to office and emergency room visits,
hospitalizations, and even death (Bates et al., 1995; Budnitz and
Layde, 2007; IOM, 2007; Sarkar et al., 2011; Vrijens et al., 2012).
Patients who have limited literacy skills, who have multiple
comorbidities, and who are elderly face the greatest risk, and limited
literacy skills are significantly associated with inadequate
understanding and use of prescription instructions and precautions
(Davis et al., 2006a,b; Persell et al., 2007; Wolf et al., 2006). The
Agency for Healthcare Research and Quality notes that only 12
percent of U.S. adults have proficient health literacy that allows
them to interpret a prescription label correctly (AHRQ, 2014).
One cause for patient misunderstanding is that physicians often
fail to communicate important elements of medication use when
prescribing a new medication (Tarn et al., 2006, 2013). Confusing
medication labels, a topic the Roundtable on Health Literacy has
tackled previously (IOM, 2008; Wolf et al., 2006), and polypharmacy
associated with patients having complex disorders or multiple
chronic illnesses (Fialová and Onder, 2009; Koper et al., 2013) also
contribute to poor patient understanding of how to take medications
properly.

BOX 1-1
Statement of Task
An ad hoc committee will plan and conduct a 1-day public
workshop that will feature invited presentations and discussion
of the role and challenges regarding clarity of communication
on medication. Potential areas of focus include use of health
literacy principles to address clarity of materials, decision aids,
and other supportive tools and technologies regarding risks,
benefits, alternatives, and health plan coverage. The committee
will define the specific topics to be addressed, develop the
agenda, select and invite speakers and other participants, and
moderate the discussions. A summary of the presentations and
discussion at the workshop will be prepared by a designated
rapporteur in accordance with institutional guidelines.

Given the importance of health literacy to the proper use of

medications, and the apparent lack of progress in improving
medication adherence (NCPIE, 2013), the Roundtable on Health
Literacy formed an ad hoc committee to plan and conduct a 1-day
public workshop that featured invited presentations and discussion
of the role and challenges regarding clarity of communication on
medication. The Statement of Task for the committee (see Box 1-1)
cited potential areas of focus to include using health literacy
principles to address clarity of materials, decision aids, and other
supportive tools and technologies regarding risks, benefits,
alternatives, and health plan coverage. The goal of the workshop,
said Bernard Rosof, chief executive officer of the Quality in
Healthcare Advisory Group and roundtable chair, was to “contribute
to efforts to communicate clearly by exploring the research that is
currently ongoing and highlighting efforts to promote better
communication.” In his introduction to the workshop, Rosof said
there is a good reason for the roundtable to revisit the topic of
health literacy as it pertains to the proper use of medication.
“Medications, of course, are a vital component of health care and
health care delivery, but when they are used incorrectly they can
result in poor outcomes, injury, and often, death,” said Rosof.
“Research has shown that almost half of all patients misunderstand
one or more of their dosage instructions and slightly more than half
misunderstand one or more warnings related to their medication.
This misunderstanding does not necessarily reflect a failure on the
part of patients or patients’ families or caregivers, but rather on the
rest of us in the health care system, who fail to provide information
clearly and simply and take the time.” He added that communicating
about medications with regard to risks, benefits, and adherence has
the potential to greatly improve patient understanding,
encouragement, and outcomes.
Rosof explained that the workshop included only one presentation
on populations with limited English proficiency not because the
roundtable or workshop planning committee failed to recognize the
needs of these populations. Rather, this workshop focused primarily
on materials in English because the U.S. Food and Drug
Administration’s regulations governing drug-related materials focus
on English-language speakers and because most of the research in
this area has been centered on English speakers.

ORGANIZATION OF THE PROCEEDINGS

The workshop (see Appendix A for the agenda) was organized by
an independent planning committee in accordance with the
procedures of the National Academies of Sciences, Engineering, and
Medicine. The planning committee’s members were Irene Chan,
Terry Davis, James Duhig, Joan Guthrie Medlen, Laurie Myers, and
H. Shonna Yin. This publication summarizes the workshop’s
presentations and discussions, and it highlights some lessons,
practical strategies, and needs and opportunities discussed by
individual workshop participants for applying the principles of health
literacy to the task of helping individuals understand how to use the
medications they take. Chapter 2 provides the patient perspective on
the challenge of understanding and following medication
instructions. Chapter 3 describes the current landscape of research
on written communications and various approaches to designing
medication-related materials at a level appropriate for patients and
caregivers. Chapter 4 presents several case studies illustrating how
research findings are translated into practice. Chapter 5 discusses
the future of health-literate design with regard to medication
materials, and Chapter 6 recounts the roundtable members’
reflections on the day.
In accordance with the policies of the National Academies, the
workshop did not attempt to establish any conclusions or
recommendations about needs and future directions, focusing
instead on issues identified by individual speakers and workshop
participants. The proceedings should not be construed as reflecting
any group consensus. In addition, the organizing committee’s role
was limited to planning the workshop. The workshop proceedings
was prepared by workshop rapporteur Joe Alper as a factual account
of what occurred at the workshop.

__________________
1 The planning committee’s role was limited to planning the workshop, and the
Proceedings of a Workshop was prepared by the workshop rapporteur as a factual
summary of what occurred at the workshop. Statements, recommendations, and
opinions expressed are those of individual presenters and participants, and are not
endorsed or verified by the National Academies of Sciences, Engineering, and
Medicine, as they should not be construed as reflecting any group consensus.
 2

Patient and Caregiver

Perspectives1

The workshop’s first panel session aimed to provide some

understanding of how patients and caregivers struggle with
understanding medication instructions, particularly when patients
require multiple drugs to treat their conditions. The three members
of the panel were Bobbie Reed, the mother and caregiver of a
kidney transplant recipient who also serves as the Pennsylvania
Kidney Advocacy Committee Liaison for the National Kidney
Foundation;2 Caleb Sexton, a patient with psoriatic disease who is
also an advocate with the National Psoriasis Foundation3 and a
designer who focuses on health literacy technology research and
human-centered design; and Darvece Monson, a nurse, patient with
chronic kidney disease waiting for a kidney transplant, and founder
of the advocacy organization More Than Your Kidneys.4 Terri Ann
Parnell, principal partner and founder of Health Literacy Partners,
moderated the panel session and the open discussion that followed
the panelists’ remarks.
 To start the conversation, Parnell asked the panelists to share one
or two lessons learned from their overall experiences with
medication communication. Reed, whose son received a kidney
transplant, said the biggest difficulty for her with regard to managing
her son’s medications was how suddenly she had to take charge.
When she and her son were in training for home hemodialysis, she
was linked to a pharmacy whose specialty was dialysis patients and
which managed all of her son’s medication. That pharmacy, she said,
provided a schedule of when her son was to take the various
medications he was prescribed and delivered those medications to
their house automatically. However, access to that specialty
pharmacy ended once her son received his new kidney and
suddenly, she said, it seemed that she was at her neighborhood
pharmacy every day, picking up one medication after another. Soon,
though, she discovered that her pharmacy also offered a specialty
service that provided a nurse case manager and around-the-clock
access to a customer service representative for no charge. This
specialty service coordinated all of her son’s medication so that she
only had to make one or two trips per month to the pharmacy to
pick up his prescriptions.
To help make her job easier still, Reed developed a spreadsheet
that denoted which medications her son needed to take at what
times and to keep track of the number of pills on hand. This
spreadsheet, which she faxes to the nurse case manager, serves two
purposes, she explained. First, it lets the pharmacy and her son’s
doctors know that he is adhering to his medication plan, and second,
it alerts the pharmacy as to when refills are needed, which enables
the pharmacy to contact her son’s care team and the transplant
center clinic to arrange for those refills, taking the burden for doing
so off her. “That was very crucial and has helped me tremendously,”
said Reed, who suggested that this type of mechanism should be
adopted for all patients requiring multiple medications. “When I took
[the spreadsheet] to the specialty pharmacy, they said they did not
have anything like it and that it was an ingenious idea.” In fact, the
pharmacy has now adopted it as a standard part of its protocol. She
noted that the responsibility for adhering to a medication plan still
rests with the patient and caregivers, but it does make managing the
process easier. She also remarked that the specialty pharmacy idea
is a great one that needs to better promoted. “I just happened to fall
upon it one day when I was at the grocery store and saw a sign that
read, ‘Did you know about our specialty pharmacy services?’”
Sexton, who has been dealing with the life-changing experience of
having psoriatic disease for the past 10 years, agreed with Reed that
services such as specialty pharmacies can play an important role in
providing patients with a better foundation for understanding their
medications. Such services can help patients learn how to
communicate the issues that can arise when someone takes multiple
medications and has to deal with multiple comorbidities associated
with their medical issues. He called for the medical system to
provide patients with information about the ecosystems that exist to
provide long-term support outside of the medical office. Wishing that
he had received that kind of information 10 years ago, he noted the
existence today of organizations such as the National Psoriasis
Foundation and social media networks that are available to help
patients better understand their conditions and better communicate
with their health care providers. In his case, being put on systemic
chemotherapy drugs and biologics and having creams to put on was
terrifying at first. Nobody told him what these various medications
did and how they might interact to produce side effects, and nobody
told him that the effects of these medications were something he
would have to endure to get better.
Speaking from her perspective as both a nurse and a hemodialysis
patient, Monson said a greater emphasis is needed on
communicating with patients about toxicity, side effects, and adverse
reactions. “The patient population generally does not understand the
difference,” said Monson. Thanks to her nursing experience, she
said, she has been able to reduce significantly the opportunity for
medication error to occur, but she doubted that she would have
been so successful without that experience. She also noted that
while she is young, mobile, and active, the majority of renal patients
are elderly and immobile, and many are not cognitively aware or
able to communicate effectively.
 When she was first diagnosed with kidney failure, she was put on
14 medications, and perhaps not surprisingly, she experienced
complications resulting from taking multiple medications. One night,
about 6 weeks into her new life as a renal failure patient, she awoke
coughing and could not stop. At first, she could not figure out why,
but then her “nurse light clicked” and she realized that her coughing
was a side effect of taking four different antihypertensive agents.
“That is going to happen, but someone else in my situation does not
know that. It was not printed on the medication to look for this side
effect,” said Monson. She polled her fellow patients at her local
dialysis center and found out that 87 percent of them did not know
about this type of medication complication. She also noted that most
of her fellow dialysis patients were coming from nursing homes and
acute care centers and were drained by the experience of traveling
to the center and undergoing dialysis. Showing someone in that
condition a video explaining their medications and expecting them to
develop a better understanding is unrealistic, she said. “We have to
consider that and come up with better ways to communicate
effectively the detriments,” said Monson.
Before asking the panelists to answer another question, Parnell
recounted some of the words the panelists used in a phone call prior
to the workshop to describe their experiences communicating with
care team members about medications: intimidated, barriers,
overwhelmed, terrifying, confusions, side effects, statistical
information to help with risk and benefit, challenging, hard,
discouraging, put off, and taken aback. “I found it overwhelming to
hear all of those terms used to describe communicating about
medications,” said Parnell. She then asked the panelists to state the
one question they wish their prescribing clinicians would ask them
when prescribing medications or changing a medication regimen.
Sexton said he wanted to be asked what his biggest fear was, for in
his mind this would have conveyed empathy regarding the
challenges he would face and a willingness to help him, both then
and in the future, deal with the unknowns regarding the many
medications he would be taking for the rest of his life.
 Parnell commented at that point that the idea of asking a patient
about their fears was a revelation to her. “I thought I did a pretty
good job over the years, always open to learning,” she said. “I would
ask, ‘What is your typical day like, do you think you will be able to
do this, who fills your medications, are you able to get them?’ I
would ask many questions, but never did I ask, ‘What is your biggest
fear or what is your biggest concern?’”
Reed then recounted an experience she had at a pretransplant
surgery visit with her son’s surgeon. The surgeon reviewed the
medications her son would be taking after receiving his transplant,
and when she asked the surgeon about a substitute for one of the
immunosuppressants in this regimen—she had already gone to the
literature to familiarize herself with the drugs used to treat her son’s
condition—he completely shut her down. The protocol was set, he
told her, and he did not want to consider any modifications. That
response, she said, was discouraging because it dismissed all of the
research she had done proactively and discounted the initiative she
had shown to learn more about the drugs her son would be taking.
A better response, said Reed, would have been to say that her
suggestion was interesting and that he would check it out.
Monson replied that she would like to be asked what she, as an
individual, is experiencing that seems out of place, but that may or
may not indicate something is wrong. For example, she said, she is
very strict about her fluids compliance and is doing well with regard
to the symptoms she would show if her disease was progressing.
The result, she said, is that her clinician cuts her visits short without
asking if something new is going on in her life. She noted that while
her nursing background helps her notice symptoms not associated
with her kidney disease that are likely related to the drugs she is
taking, that is not true for most people. She suggested that people
keep a diary to track how they feel throughout the day and of any
unusual feelings or symptoms they are experiencing. They can then
use that diary as a way of advocating for themselves with their
physicians.
Sexton agreed that physicians should encourage their patients
with chronic conditions to keep a journal, whether on paper or using
an enabling technology, as a means of creating a two-way flow of
information that would ultimately help the physician respond to the
specific needs of individual patients. He noted that when patients
with life-altering chronic illnesses visit their physicians every few
months, they are asked generic questions such as “What happened
in the past 3 months?” Without some type of journal, few patients
would be able to answer that question in any meaningful way. “It is
critical that we have a better understanding of the context and lived
experiences of our patients by being able to enable that kind of data
capture and make it meaningful so that both the care provider and
patient can better manage their care more effectively and more
efficiently in ways that really look at what is going on in their life,”
said Sexton. “Are they having dietary issues? Are they having more
stress? What is going on outside of being in this room? What is
outside of the medical record that we can pull up on our electronic
health record (EHR) systems?” Sexton added that this type of
patient-recorded information could help physicians identify side
effect issues or life events that make compliance difficult.
Next, Parnell asked the panelists for their ideas on what clinicians
can do to enhance communication, whether written or oral. One
suggestion Reed had specific for kidney dialysis patients, which she
heard from her son’s posttransplant coordinator, is for there to be
multiple education sessions for patients during which they would
gradually learn about their medications. Her son’s transplant
coordinator told her that too many patients come to her unprepared
to manage the multiple drugs they require after a transplant because
the dialysis centers have previously taken care of everything and the
patients never learn to take charge of their medications on their
own. “By the time they get to [the coordinator], having got a kidney
transplant, she finds that those patients are losing their organs or
they are going into rejection simply because they are telling her that
they cannot manage their medications. They do not know how to
take them or when they should take them.” Parnell remarked that
health literacy experts talk about conveying information in chunks, of
giving them two or three key points and then building on those
points. Reed agreed that type of approach would help patients take
ownership of their particular situation and empower them to do even
more down the road.
Monson suggested that everyone on the health care team needs
to be proactive about being partners with their patients and
encouraging them to ask questions and talk about what they are
experiencing on a day-to-day basis. For example, as a 34-year-old
when she was first diagnosed, she was still ovulating and the many
medications she was taking were interfering with her menstrual
cycle. She knew something was wrong, but because the majority of
patients on dialysis are elderly, nobody at the dialysis center even
thought to consider how the 14 drugs she was taking would affect
her menstrual cycle. It was only through a close relationship she
developed with the pharmacist on her care team that the two of
them were able to figure out what was happening and change how
she was being treated. Now, she said, she is participating in four
research studies aimed at understanding more about how the typical
drug regimen for kidney dialysis patients interacts in a younger
woman. What worries Monson is that not everyone can
communicate as well as she can or has the background that she
does to know to pay attention to things that seem out of the
ordinary and report them to their care team members.
Reed noted a book, The Patient Will See You Now, that helped her
communicate effectively with her son’s physicians. This book talks
about how to set expectations and what to expect from care team
members. “It was well worth reading in terms of communicating,
trying to get your point across, and getting people to do what you
want them to do,” said Reed.
For her final question to the panelists, Parnell asked them for one
innovative solution to enhance medication communication. Both
Reed and Monson nominated the need for funding to assist with
medication and better information about different funding
mechanisms. Reed, for example, worries that her 26-year-old son
will lose Medicare coverage for his medications, which he needs to
take for the rest of his life, after 36 months. Monson noted that
every pharmaceutical company has options to help people with
medication costs, but many people are not aware of those programs,
and if they do know of them are intimidated to apply for assistance.
She said that care team members need to do more to raise
awareness of those assistance programs, other safety net programs,
and even clinical trials that can help patients deal with the cost of
their medications.
Sexton said one of the most fundamental and simple innovations
would be to reframe the perspective of care providers when thinking
about these long-term chronic conditions. Such a diagnosis means
that patients will experience drastic changes in their lives. “It is a
constant experience that has to be navigated,” said Sexton, and
physicians need to think about the impact of that diagnosis as more
than just something that triggers office visits, but rather as a
journey. He believes that thinking of these conditions in that way will
change the mindset of physicians and how they think about
providing care for their patients.
Sexton also noted that he has been working on technology
solutions that can enable better avenues of communication between
patients and clinicians and increase providers’ understanding of what
their patients’ lives are like and the experiences that have been
associated with their medical conditions. The goal of such
technology solutions, he said, should be to empower patients to do
something meaningful in their lives and not feel that they are stuck
in a terrifying situation through which they have to suffer alone.
“Even if it is as simple as designing applications that allow you to
just track your metabolism or your food diary, your sleep, or your
stress levels and be able to connect that back to your doctor’s EHR
so that whenever you come back, it is no longer those 10 generic
question or those 10 generic responses. It is very specific answers
and very specific questions about instances and situations in your
patient’s life, so you can better say, ‘Maybe we need to make a pivot.
Maybe this medication is not working. Maybe we should try
something new.’” Such applications, said Sexton, could help create a
relationship and establish two-way communication so that treating
chronic conditions becomes a partnership rather than a doctor-
driven dictatorship.
 Reed added that it is vitally important for EHR systems to be able
to communicate with one another, particularly with regard to
medications. Her son, for example, cannot list all of his medications
on a medical alert identification bracelet. In Pittsburgh, where her
son lives, there are two major medical systems that do not share
medical records. “There has to be some sort of centralized network
going forward so that no matter where you are, the information is
accessible,” said Reed.

DISCUSSION
Terry Davis from the Louisiana State University Health Sciences
Center began the discussion by recounting a story told by her
research assistant, who said she was tired of the health care system
thinking of her solely as a patient with type 1 diabetes who should
be treated with the standard evidence-based treatment protocol and
not as a 28-year-old who runs marathons, goes camping, and drinks
beer with her friends. She then asked the panelists if they had any
idea how to get clinicians to think beyond the standard treatment
protocols and consider how individuals lead their lives. Monson
replied that the only way she knows to accomplish this is for patients
to take responsibility for letting their clinicians know they need to
consider the human factor when developing treatment plans. “The
human factor has to be the individualistic source of wellness,” said
Monson, who considers herself a 36-year-old marathoner, triathlete,
and personal trainer, not a kidney failure patient. “Everybody focuses
on my failure, but what about the other elements of my life?” she
said. At one point, she recalled, she had a catheter in her heart for 7
months and was immunocompromised. “I still had to take care of my
family, be a nurse, raise a child, and be a woman. How can I do
that? No one ever asked me about that.”
Sexton agreed with Monson and argued that while physicians have
to be objective, they also need to be empathetic and aim to
understand the individual, not just the patient. The best physicians
consider their patients’ goals and aspirations and work with their
patients to create care plans to get them where they want to be.
Davis added that one thing physicians can do to change their
perspectives from patient to person is to ask a patient about their
greatest fears, their issues, and their goals.
Jennifer Dillaha from the Arkansas Department of Health noted
that many of the comments so far reflected something she observed
in the early trials of drugs for HIV, which is that the factor that
seemed to make the biggest different in terms of medication
adherence was whether or not the patient perceived that people in
the clinic cared about them. Given that, she asked the panelists if
there were things they wished the people they interact with could do
differently to better communicate empathy in a way that would
influence how well they could adhere to their medication regimen.
Reed said when she and her son went for their initial transplant
evaluation, they endured an unbelievably long day in which they
were overwhelmed with information. When she suggested afterward
that it might be better if the transplant center could hold a series of
mini-workshops at which potential patients and their caregivers
could be given the same amount of information at a more
reasonable pace and in a more interactive learning environment, she
was shot down. Reed also noted that while her son’s experience at
the dialysis center was largely positive, the experience of being on
the transplant waiting list was “a horrendous experience” that
involved interacting with five different transplant coordinators. “I
think there has to be continuity and there has to be ongoing
education as opposed to a one and done deal,” said Reed.
Ruth Parker from the Emory University School of Medicine asked
the panelists for their thoughts on how digital technologies could be
leveraged to get patients and their caregivers good, clear,
actionable, health-literate information about medication. Reed has
found social media, particularly Facebook, to be a starting point,
although she has been unable to find any groups relating to her
son’s illness and the medications he has to take. She commented
that people on dialysis sit in a chair multiple times per week for
hours at a time, usually watching television or surfing the Internet.
“That would be a perfect opportunity or an access point for you to
get the information out there and ask them questions,” said Reed.
She also noted that some dialysis centers use a device that transmits
data from a home dialysis unit to the center. Her son did not have
access to that device, but it would have made her job and the clinic
nurse manager’s job easier.
Sexton added that social networks are crucial sources of
information. These networks can be in the form of forums run by
national foundations or patient support groups on Facebook or
Twitter, for example. “Those kinds of forums and those support
groups are so mission critical because they give you a voice and an
understanding that there are other people out there like you,” said
Sexton. He commented that there are many digital tools and mobile
phone apps available, but most are unable to integrate with an EHR
system and thus cannot feed potentially useful information to
providers. This is doable, however, and he noted that all of the
major EHR vendors are working to develop applications that will
enable their systems to access third-party datasets. As an example,
he said that Humana has developed smart scales that integrate with
its EHR system so that clinicians can better manage and track weight
loss, which has improved outcomes. The challenge going forward,
said Sexton, is to create streamlined digital ecosystems in which
different components of an EHR system can exchange data among
themselves and with patient-generated data as a means of
increasing access to information by both the patient and the
patient’s care providers. Parker asked Sexton for his opinion on the
use of interactive payment systems as a means of communicating
about medications. Sexton said such systems are necessary and
could be used to push reminders to patients and then feedback
adherence data to the patient’s care providers. He noted that he
uses a whiteboard on which he lists when he needs to take which
medication as well as setting multiple reminders on his smartphone.
Jane Grover from the American Dental Association asked the
panelists if their oral health providers were informed about their
medical conditions and if their medical providers asked about their
oral health status. Monson said the first symptoms of her kidneys
failing—the result, she believes, of the 38 pills per day she had been
taking 1.5 years prior to that to treat pregnancy-induced
hypertension—was a bad taste in her mouth, which affected her
desire to eat. While she neglected to mention this to her physician,
she did tell her dentist, who could find nothing wrong with her. She
learned some 3 months later, when diagnosed with kidney failure,
that the bad taste in her mouth is one of the symptoms of kidney
failure. She also noted how important oral health is for a person on
dialysis given how critical diet is when undergoing dialysis.
As an aside, Monson commented that dialysis centers do not allow
patients to post pictures on social media, but she thinks this is a bad
policy because it perpetuates the dismal image of dialysis. “We are
not encouraging the idea that you can be on dialysis and have a
healthy attitude.”
Reed remarked that dental care was stressed throughout her son’s
dialysis and transplant journey, and after her son received his
transplant he was informed that he would have to take antibiotics
prior to any dental procedure going forward. She noted that she and
her husband are proactive parents who make sure that their son has
regular dental appointments as well as an annual dermatology exam
because of his elevated risk of developing skin cancers as a result of
the medications he takes.
Laurie Francis from the Oregon Primary Care Association
commented that the remarks so far point to the convergence of
patient care, human-centered design, and health literacy, and their
impact on medication compliance. She then asked how to
incorporate patients’ lives, needs, strengths, resilience, and fears in
the way the health care system approaches patients at the time of
first contact. “How would it look if we met you where you are with
what you are wondering about and built your care with you around
your goals instead of us constantly trying to tell you how we would
like you to meet our goals?” she asked the panelists. Monson agreed
that meeting her where she was—a mother of a 6-year-old and an
unemployed nurse who could no longer afford her medications—
instead of focusing on where the medical system needed her to be
would have alleviated some of the enormous pressure she was
under in the months after her diagnosis. In her case, her fiancé kept
her going, prodding her to go to her appointments and keep a
positive attitude. She now believes she needs to be the poster child
for renal disease every day. Sexton added how important it is to get
the message that life goes on during difficult times. He related how
much he appreciated hearing from his dermatologist that there will
be hard times coming because of the multiple medications he would
be taking, but that if he took care of himself life would be
meaningful and not all about his illness. “The psychological effects,
the social effects are so critical,” said Sexton. “We miss the boat on
that quite frequently.” Monson agreed, which is why she named her
organization More Than Your Kidneys to reflect the fact that patients
need to figure out what type of life they are going to live beyond
their diagnosis and that they are likely to need help from outside of
the medical system to do so because most physicians are not
equipped to provide that kind of advice.
Reed said she would have liked to have had a roadmap to give her
of what may happen on the journey ahead. Instead, she had to
continually ask questions and set her own plan into action based on
what might or might not happen. Two important steps, she said, are
to explain to patients what can happen if they do not adhere to their
medication regimen and how they will benefit when they stay on
their plan.
Wilma Alvarado-Little from Alvarado-Little Consulting said what
resonated with her from the panelists’ remarks was the issue of
empowerment and advocating for oneself. She then asked the
panelists if they had any advice for parents who have to advocate
for their children. Reed replied that having a good support network
is important when you have a child with a terrible disease and that
there are support groups available that are geared specifically
toward the parents of pediatric patients.
Robert Logan from the National Library of Medicine noted that
there are medical centers in the United States that specialize in
listening to a patient’s life and journey stories and embrace diverse
comments as a foundation of patient-centered clinical care. Logan
cited the Nuka System of Care model practiced by the Southcentral
Foundation in Anchorage, Alaska,5 as an example of how innovative
approaches to listening to patients also are linked to clinical quality
improvements. “Many of the things you discussed are definitely in
place and are making significant clinical differences,” said Logan. “I
wish those places (medical centers) were the model that was used
throughout the United States and in other countries around the
world.” Bernard Rosof concluded the discussion by recounting a
comment that Donald Berwick, former administrator of the Centers
for Medicare & Medicaid Services, made in a commencement
address. Speaking to new graduates of Yale Medical School, Berwick
told the graduates to take off their white coats and sit among their
patients to get insights into what they really need to know. “That is
what I think I heard today from the panel,” said Rosof. He added
that while technology, data, and social media are important elements
to caring for patients with complex illnesses, personal involvement,
concern, and communication remain key elements.

__________________
1 This section is based on the presentations by Bobbie Reed, the mother and
caregiver of a kidney transplant recipient and the Pennsylvania Kidney Advocacy
Committee Liaison for the National Kidney Foundation; Caleb Sexton, a patient
with psoriatic arthritis, an advocate with the National Psoriasis Foundation, and a
designer who focuses on health literacy technology research and human-centered
design; and Darvece Monson, a nurse, patient with chronic kidney disease waiting
for a kidney transplant, and founder of the advocacy organization More Than Your
Kidneys. The statements are not endorsed or verified by the National Academies
of Sciences, Engineering, and Medicine.
2 See https://www.kidney.org (accessed July 25, 2017).
3 See https://www.psoriasis.org (accessed July 25, 2017).
4 See http://www.morethanyourkidneys.org (accessed July 25, 2017).
5 See https://www.southcentralfoundation.com (accessed on March 31, 2017).
 3

Approaches to Health-
Literate Medication
Instructions

The workshop’s second panel featured three presentations on the current

landscape of research on written communication and human-centered
design. William Shrank, chief medical officer of the University of
Pittsburgh Medical Center (UPMC) Health Plan, discussed research on
written communications. Irene Chan, deputy director in the Division of
Medication Error Prevention and Analysis at the U.S. Food and Drug
Administration (FDA), then spoke about designing labels and labeling for
patients, and Edmond Israelski, technical advisor on human factors and
retired director of human factors at AbbVie Inc., addressed the use of best
practice human-centered design methods in the design of medication
materials. An open discussion moderated by Bernard Rosof followed the
three presentations.

AN OVERVIEW OF RESEARCH ON WRITTEN

COMMUNICATIONS1
 Fifteen years ago, when William Shrank was starting a fellowship,
health literacy was just becoming a topic of interest, thanks to the
pioneering work of Terry Davis and Ruth Parker. “When you think about
where the discussion was then and where the discussion is today, it is
pretty extraordinary the amount of progress and change and to some
extent, a lack of coordination, but also an extraordinary amount of
innovation,” said Shrank. He then noted how important it is today to look
at the issue of health literacy and communication about medications in
the context of the rapidly changing health care landscape. In this new era
of paying for quality instead of for volume, providers are taking on more
financial risk, which is leading them to become more concerned than ever
about what happens to patients once they leave the doctor’s office. As a
result, providers need to better communicate and engage with their
patients. “It means that these measures that some of us have been doing
research on for a long time are suddenly front and center in every primary
care doctor’s office with regard to how their patients are taking their
medications,” said Shrank.
This fundamental change, he said, creates a unique business context
for a host of players in the industry to participate in efforts to improve
communication with patients. Pharmacies, for example, are now
partnering with health systems to support patients between visits to their
doctors, and pharmacy benefits managers are creating a better
infrastructure and collecting data for tracking whether patients are
adhering to medication plans. Countless start-up companies are trying to
find a niche in which they can support providers. The result, said Shrank,
is that there is an enormous amount of attention, growth, and interest in
understanding how to better communicate and support patients regarding
their medication use.
Another fundamental change in health care that is germane to health
literacy and medication adherence is the shift in cost sharing from
employers to their employees. As a result, Shrank explained, patients are
now educating themselves about price and quality like never before and
are making provider choices based at least in part on such information.
Patients today, he said, are looking for practices that explain more, that
make their patients feel cared for, and where they believe there is some
mechanism in place to help them manage their complex lives and
medication regimens. “That means that anyone who cares about whether
that consumer gets their care at their site or through their service sure
better figure out how to communicate with that consumer,” said Shrank.
Shrank then claimed there is more investment in this area today than
he could have ever imagined. As an example, he explained how CVS
Health, a large retail pharmacy chain with a reputation for working with
and focusing on consumers, allocates substantial resources to understand
what words work in terms of patient communications, what messages
work, what vehicles work, and how messages should be delivered. CVS
Health also works with a remarkably deep set of analytics and predictive
modeling, he added, to rapidly assess what is working or not working,
and continually strive to understand how to get the right intervention to
the right person. “These investments are driving the way CVS
communicates with patients, the words they choose, the channels that
they leverage, and the way in which they are continually trying to
improve,” said Shrank, who formerly worked for CVS.
Health systems, including the UPMC health plan where he currently
works, are also investing a significant amount of energy in figuring out
how to communicate better with its providers’ patients. “We have a rich,
robust consumer innovation arm and have acquired probably a dozen
companies specifically to help us use different kinds of technology and
different kinds of data to better target and deliver the right intervention to
the right patient regarding their medications or their chronic disease
management,” explained Shrank. The focus of this work, which now
involves more than 100 employees at the UPMC health plan, is on learning
internally, improving continually, and running the business as well as
possible, but with a “deep and profound commitment to understanding
how we communicate with our patients best to deliver the very best care
we can.”
One result from all of these efforts, said Shrank, is that patients may
actually become overwhelmed with information. “A patient with diabetes
and heart failure might be getting calls from many different sources,” he
said. Another issue is that while the field is investing enormous resources
in this type of research, there is no collaboration among organizations.
“Ultimately, there is a great deal of inefficiency here,” said Shrank. “We
are all studying many of these same questions, approaching them in
many of the same ways, and leveraging many of the same analytics. A
rising tide would lift all ships here if we were able to bring together all of
these efforts, all of these resources, all of this speed, and all of this
Another random document with
no related content on Scribd:
The Project Gutenberg eBook of I ragazzi d'una
volta e i ragazzi d'adesso
This ebook is for the use of anyone anywhere in the United States
and most other parts of the world at no cost and with almost no
restrictions whatsoever. You may copy it, give it away or re-use it
under the terms of the Project Gutenberg License included with this
ebook or online at www.gutenberg.org. If you are not located in the
United States, you will have to check the laws of the country where
you are located before using this eBook.

Title: I ragazzi d'una volta e i ragazzi d'adesso

Author: marchesa Colombi

Release date: March 3, 2024 [eBook #73094]

Language: Italian

Original publication: Milano: Galli, 1888

Credits: Barbara Magni and the Online Distributed Proofreading

Team at https://www.pgdp.net (This file was produced from
images generously made available by Biblioteca Nazionale
Braidense - Milano)

*** START OF THE PROJECT GUTENBERG EBOOK I RAGAZZI

D'UNA VOLTA E I RAGAZZI D'ADESSO ***
I RAGAZZI D’UNA VOLTA
E I RAGAZZI D’ADESSO.
 LA MARCHESA COLOMBI

I
RAGAZZI D’UNA VOLTA
EI
RAGAZZI D’ADESSO

MILANO
GIUSEPPE GALLI, EDITORE
Galleria Vittorio Emanuele, 17 e 80
—
1888.
 Proprietà Letteraria
Milano. — Tip. Filippo Poncelletti, Via Broletto, 43.
INDICE
 DUE PAROLE D’ESORDIO

A misura che considero l’esistenza dei ragazzi che mi circondano, mi

convinco sempre più, che questo è un tempo estremamente
fortunato e bello per la fanciullezza. I bambini sono i despoti delle
famiglie, i padroni del mondo, anche nelle case dove una giusta e
voluta severità, non permette alle piccole testoline capricciose di
avvedersi troppo di questa loro fortuna.
Si vedono intere famiglie della borghesia trasportarsi, nell’estate, in
riva al mare, o sui monti, o a qualche sorgente di acque minerali, —
anche a costo di gravi sacrifici di borsa, — per rinforzare un bambino
gracile, per ridare un po’ di roseo alle guancie impallidite di una
bambina. A’ miei tempi i bambini delicati e poveri morivano, ed i
genitori piangevano amaramente. Ma le bagnature e le cure
climatiche erano riservate esclusivamente alla gente ricca.
Ora invece, se non si può movere la famiglia, si cerca, e si trova una
pensione, economica relativamente, ma sempre gravosa per le
piccole rendite e per la gente che vive del proprio lavoro; ma il
ragazzo non è mai privato della cura che si richiede per la sua
salute.
Pei figlioli dei poveri vi sono delle beneficenze che provvedono alle
cure climatiche ed ai bagni di mare.
Negli istituti, nelle famiglie, si usa far visitare tratto tratto da un
dentista i denti dei giovinetti, per preservarli da quell’orribile carie,
che altre volte rovinava i denti tanto presto, senza altro rimedio, nella
maggioranza, che quelli a cui si ricorreva quando gli spasimi lo
richiedevano imperiosamente, e che, bene spesso, distruggevano il
dente insieme col male. I nostri vecchi, dente più dente meno, non
se ne curavano troppo, e dicevano che queste sottigliezze erano
buone pei figlioli dei gran signori.
E le scuole dove noi s’andava a gelare l’inverno, ed a soffocare
l’estate, sono ora riscaldate ed aerate bene, a seconda della
stagione. Ed invece di passarvi una quantità di ore immobili, come si
faceva altre volte, ora vi si alternano gli studi colla ginnastica, colle
lunghe passeggiate; si misura il tempo, si studia soltanto in date
stagioni; tutto per riguardo alla salute ed al benessere dei ragazzi.
Conosco degli istituti dove le giovinette, che non si debbono esporre
al freddo della strada per andare a far colazione alle loro case, si
portano una costoletta preparata in un piattino, ed un piccolo fornello
a spirito, e nell’ora della ricreazione si cuociono quel manicaretto
sostanzioso. Ne conosco altri, dove l’istituto stesso fornisce, dietro
richiesta dei genitori, le colazioni calde alle alunne, come se fossero
in una piccola locanda.
Ai nostri tempi la colazione che si portava alla scuola era composta
di pane e frutta. Non altro. Le bottigliette del vino, che ora si portano
generalmente, ci avrebbero inspirata una grande stupefazione.
I castighi, i veri castighi che tutti noi ricordiamo, — lunghe
genuflessioni, lunghe reclusioni in un camerino, privazioni di frutta, e
persino il regime a pane e minestra per vari giorni, tutto questo è
passato allo stato di leggenda.
Non so se i fortunati bambini, curati, accarezzati col dolce sistema
moderno, che approvo, riescano moralmente migliori di quelli d’altre
volte, avvezzi dai primi anni a sopportare delle piccole contrarietà.
Non so neppure se il loro fisico si rinforzi realmente nelle agiatezze;
ad ogni modo, l’infiacchimento che può provenire dalle soverchie
delicatezze, dev’essere corretto dalle cure igieniche.
Ma quello che mi parrebbe naturale, è che i bambini d’adesso
fossero più felici dei loro piccoli predecessori, trattati tanto più
rozzamente, e tenuti in soggezione. Ed invece non mi pare di
riscontrare nelle piccole brigate e sui volti giovinetti dei bimbi del
ceto civile, l’allegria schietta, spensierata che una volta era generale
nei fanciulli.
Vedo sovente dei visini giovani improntati d’una gravità prematura,
ed alle volte d’un’ombra di malinconia che m’impensierisce.
Oh bambini; o gioventù noncurante! Se sapeste a che amore
s’inspirano quelle cure che vi circondano e che spesso vi danno
noia; se sapeste che lavoro assiduo, che privazioni, e che pensieri, e
che cumulo di fastidi costano ai vostri parenti, ne avreste un
vantaggio infinito, perchè, se non altro, ne risentireste la gioia
suprema di sapervi amati fino al sacrificio; e le gioie di questa specie
fanno bene allo spirito ed al cuore, quanto l’igiene fa bene al corpo.
I nuovi sistemi, che rendono tanto dispendiosa l’educazione dei figli,
non permettono più, o permettono di rado ai parenti di accumulare,
anno per anno, dei piccoli risparmi, e di crearsi un modesto
patrimonio, pel riposo e per l’agiatezza della loro vecchiaia.
Eppure vi sono parenti che, pel benessere dei loro figli, accettano
anche questa prospettiva orrenda, della povertà nella età avanzata,
dopo una lunga vita di lavoro.
Si rassegnano a campare come potranno, magari della riconoscenza
dei figli che hanno allevati, a vivere in una relativa dipendenza,
nell’età venerabile che avrebbe diritto a tutte le indipendenze, a tutte
le supremazie, quando si gloria del ricordo d’un passato onesto ed
operoso.
Questo è il colmo, è la sublimità dell’abnegazione; è l’eroismo della
paternità.
È perchè i miei piccoli lettori possano apprezzare al loro alto valore
le cure, i sacrifici che si fanno per loro, perchè si fermino qualche
volta a considerare quanto tesoro di benevolezza rappresentano una
costoletta, un paio di guanti, un mantellino imbottito, un’inezia, che
per lo più lasciano passare inosservata, che ho scritti, dal gennaio al
dicembre del 1886, questi racconti, e che ora li raccolgo in un
volume.
Sono una serie di episodi veri, dell’infanzia, e della gioventù di
persone, che ora sono mature o vecchie, e specialmente del mio
nonno, che è morto da vent’anni.
Egli era fanciullo nell’ultimo quarto del secolo passato, quando a
pochi, a pochissimi eletti, figli di grandi famiglie patrizie, erano
concesse certe raffinatezze, delle quali ora si circonda anche un
bambino di condizione modestissima. Allora i figli dei piccoli
possidenti, dei commercianti, dei professionisti, erano allevati un po’
alla guardia di Dio, e dovevano cominciar presto a lavorar di gomiti
per farsi largo nella vita.
Sono episodi semplici, buffi fors’anche. Ma quando ne avrete riso,
bambini, ripensateci un poco; e vedrete come per voi si sono
spianate tante difficoltà, come si sono banditi tanti rigori, come la
vostra esistenza è più facile ed agiata. E, se siete buoni, ne sarete
commossi, e sentirete un’immensa gratitudine pei vostri maggiori
che si consumano la vita a lavorare per voi.
 Come il nonno imparò a nuotare

Il nonno, che quando era bimbo, come è ben naturale, non era punto
nonno, e si chiamava Andrea, abitava in un piccolo villaggio del
basso Novarese. Suo padre era farmacista, il che, a quei tempi, non
significava, come ora, preparare e vendere medicinali e, per giunta,
tenere una raccolta di specialità più o meno ciarlatanesche in
boccette e scatoline eleganti, e ciarlar di politica col medico condotto
e con le altre autorità e notabilità del paese.
Il farmacista di Cerano, allora, vendeva e fabbricava una serie di
cose, anche estranee affatto alla farmacopea; come per esempio il
carbone, la polvere di riso, la cioccolata, la mostarda.
Era dunque un uomo straordinariamente affaccendato, ed aveva ben
poco tempo, per non dire che non ne aveva punto, per occuparsi a
vezzeggiare i suoi figli.
Sua moglie era in farmacia fin dalla mattina, e faceva le veci del
marito tutto il tempo che egli doveva passare alle carbonaie. E
quando lui prendeva il suo posto dietro il banco, lei badava alla
cucina, al bucato, a tenere in ordine i vestiti dei figlioli,
all’allevamento dei bachi nei mesi di maggio e giugno, ai polli, alle
oche, ad un’infinità di cose, per le quali le ventiquattr’ore della
giornata le bastavano appena, grazie alla sua grande attività; ma, a
rigore, sarebbero state insufficienti.
I figli, che erano tre, venivano svegliati ogni mattina dalla mamma,
che, di buonissima ora, bussava forte all’uscio dello stanzone, dove
dormivano su tre lettucci, composti di due cavalletti, d’un saccone di
foglie e d’una materassa.
A cinque anni cominciavano già a lavarsi e vestirsi da sè alla meglio.
Prima dei cinque anni, era Andrea, il fratello maggiore, che aiutava i
più piccini. Gli era capitata addosso a sei anni quella prima
responsabilità; ma non gli era mai riuscita gravosa.
È vero che qualche volta i piccini, assonnati, capricciosi, gli
menavano qualche pugno; ma lui lo rendeva equamente; se
gridavano, gridava più forte di loro, e, bene o male, finivano sempre
per esser vestiti tutti ogni mattina, e per scendere in cucina.
Era là che la mamma li aspettava per le preghiere; così, senza
perder tempo, recitava forte un pater, un’ave, un credo, mentre
scodellava la polenta, e versava in ogni scodella di polenta calda,
una buona mestola di latte fresco pei figlioli.
Dette le orazioni e mangiata la polenta, i tre ometti andavano alla
scuola, muniti del sillabario, della dottrina cristiana, dell’abbaco, del
quaderno per lo scritto, e d’un panierino col pane ed una mela per la
colazione del mezzogiorno. Il pane era abbondante, la mela era
sempre una sola; e quando non era la mela erano quattro noci, o
una pera. Mai nulla di più appetitoso. La costoletta, la bistecca, o le
ova sbattute delle nostre scolarine moderne, non erano mai balenate
alla mente di quei ragazzi, neppure in sogno. Se avessero udito di
qualcuno che si fosse portato il vino per la colazione a scuola, come
ora si fa da molti, avrebbero creduto che si trattasse del principe
Camaralzaman o della principessa Badour, delle Mille ed una notte,
e l’avrebbero considerata come una delle tante stravaganze di quei
personaggi meravigliosi.
Al ritorno dalla scuola, babbo e mamma, facevano trovare ai figli il
desinare, il focolare acceso nell’inverno, il letto per dormire, gli abiti
per mutarsi. Confetti, trastulli, passeggiate, giochi, vezzeggiamenti,
erano cose ignote.
E questo, non perchè il babbo del nonno fosse veramente povero.
Aveva qualche fondo, la farmacia, e guadagnava benino, ed in un
piccolo paese come Cerano, dove la vita costava meno che in città,
ed a quei tempi, si poteva dire un uomo agiato.
Ma prendeva la vita molto sul serio. Aveva dei principii austeri. Guai
a fare un debito! A’ suoi occhi era una vergogna. Guai a ritardare
d’un giorno un pagamento; era mancare ad un dovere. Guai a
spendere quattrini in una cosa inutile, in una superfluità, in un
divertimento, mentre con quel denaro si poteva fare qualche cosa di
seriamente giovevole all’avvenire dei figli, o soccorrere della gente in
miseria! E quell’austerità l’applicava a sè stesso prima che agli altri.
Vestiva quasi come i contadini del paese, mangiava nel modo più
frugale, non aveva mai portato guanti in vita sua, non andava mai
neppur fino a Novara, se non per necessità del suo commercio o
della famiglia, non entrava mai nell’unico caffè del paese, e tanto
meno nell’osteria.
Nessuno dunque poteva biasimarlo se non comperava dei giocattoli
ai suoi figli, per quanto loro li desiderassero.
Del resto i ragazzi si trastullavano egualmente. Ma lo facevano per
iniziativa propria e come potevano. Uscivano soli pel paese,
andavano in cerca di nidi, coglievano le more sulle siepi, pescavano
nella Morra, vi facevano i bagni; ed era un arrampicarsi, un saltare,
un correre, un dimenarsi in tutti i modi, che non aveva nulla da
invidiare alla ginnastica sistematica delle nostre scuole.
La mamma se ne accorgeva dagli strappi che trovava nei vestiti,
ognuno dei quali era salutato da una sgridata o da uno scappellotto.
Ma la mamma non ci metteva fiele, ed i ragazzi non se ne avevano a
male.
Nei calori ardenti dell’estate, tutti gli altri spassi erano trascurati, ed i
giovinetti del paese passavano nell’acqua tutte le ore che la scuola e
le occupazioni di casa lasciavano loro di libertà.
Quasi tutti sapevano nuotare. Eppure nessuno aveva mai presa una
lezione di nuoto, nè era mai stato accompagnato in acqua da un
marinaio, nè s’era legate sulla schiena due zucche come le ali d’un
amorino, nè s’era aggrappato disperatamente ad un salvagente. I
parenti d’allora non si davano tante brighe. Trovavano che il nuoto
non era una necessità, e dicevano: «Se non potete imparare da voi,
fatene a meno».
Molti, molti anni dopo, quando il piccolo Andrea era diventato il
nonno, noi s’andava qualche rara volta in campagna per alcuni giorni
sul lago d’Orta. Là c’erano delle nostre compagne, che avevano una
casa in riva al lago, una darsena, un canotto, un marinaio, o
piuttosto un barcaiolo, marinaio d’acqua dolce.
Noialtri pure avremmo voluto nuotare, ma non sapevamo. S’entrava
nell’acqua a uno a uno col barcaiolo che ci teneva le mani, e ci
faceva fare l’esercizio, ripetendo all’infinito, come fanno i caporali coi
coscritti: «Uno, due, tre, quattro». Noi ci si metteva un’attenzione
intensissima che ci irrigidiva tutti, e si aveva una paura smisurata, e
non si riesciva mai a mettere d’accordo le braccia con le gambe, e
s’andava regolarmente sotto, appena il barcaiolo ci lasciava.
Il nonno, alto, forte, tutto bruciato dal sole, stava ritto sulla spiaggia
come una grande statua di bronzo, e, ridendo dei nostri sforzi,
diceva:
«Io non ho mai imparato quell’esercizio, eppure sono stato un
nuotatore famoso. Ma ai miei tempi queste cose non entravano nel
numero di quelle che si debbono imparare. Era un gusto come un
altro, e, chi lo voleva, se lo procurava come poteva».
«A Cerano, poco fuori dal paese, c’era un ponte sulla Morra, alto
come un secondo piano, ed anche più. Si chiamava: Il ponte del
diavolo. Vi sono molti ponti che si chiamano così, sebbene non
abbiano nulla di tremendo, di diabolicamente pauroso e bello, come
il Ponte del diavolo che i viaggiatori vanno ad ammirare sulla via del
Gottardo.
«Vedevo i miei compagni che spiccavano il salto da quel ponte,
affondavano un istante, poi diguazzavano scotendo l’acqua e
spruzzandone da tutte le parti, e col capo fuori dall’acqua tiravano
via a nuotare allegramente.
«Li invidiavo. Mi struggevo di fare altrettanto. Ma ero ancora molto
piccino. Avevo, credo, sette anni. Non sapevo nuotare, e dovevo
accontentarmi di bagnarmi alla riva, correndo nella sabbia,
coll’acqua fino alle spalle.
«Una volta domandai a mio padre:
— Come si fa per imparare a nuotare?
«E lui mi rispose:
— Ma! Si prova. Io ho nuotato finchè sono stato giovane, senza che
nessuno mi abbia mai insegnato.
«Poi, crollando le spalle, soggiunse:
— Del resto, non c’è nessun bisogno d’imparare a nuotare, quando
non si deve fare il marinaio.
«Io non ne parlai più. Ma ne avevo una gran voglia. Un giorno stavo
sul Ponte del diavolo guardando alcuni compagni che nuotavano di
sotto, e dissi a due altri che si preparavano a fare il salto:
— Come mi piacerebbe di saper nuotare anch’io!
«Non avevo terminato di dirlo che mi sentii sollevare da terra e
precipitare nel vuoto, mentre i compagni che mi buttavano giù,
gridavano agli altri che erano già nel torrente:
— Attenti! attenti! Badate che vien giù Andrea!
«Affondai nell’acqua, provai un gran freddo, una gran soffocazione,
poi respirai a stento. Avevo la testa fuori dell’acqua e due nuotatori
me la reggevano, tirandomi innanzi.
«Non so come avvenisse, ma bastò quella lezione.
«Il giorno dopo spiccai il salto da me, ed ebbi appena bisogno
dell’aiuto dei compagni per tornare a galla.
«La terza volta non ebbi bisogno di nessun aiuto. Sapevo nuotare.
«La mamma, quando le dissi quel fatto si mise di malumore; forse
aveva paura per me; ma non me lo disse.
«Mio padre borbottò tutto accigliato: — che ero una testa matta, che
avevo arrischiato di rompermi il collo per imparare una cosa inutile,
un perditempo...
«Io mi arrischiai a dire:
— Ma ha detto l’altro giorno che anche lei ha nuotato finchè è stato
giovane, babbo...
— È vero. Ma non ho cominciato dal salto. E poi, se io ho perduto
del tempo inutilmente, non è quello che ho fatto di meglio, e non devi
imitarmi. Se hai delle ore di troppo vieni alle carbonaie, che troverai
da occuparti meglio.
«Fu tutta la gloria o l’ammirazione che mi fruttò quel mio rapido
progresso nella nautica.
«Tenetelo a mente, signorini, che mi fate spendere i quattrini della
lezione, e credete di aver fatto molto, e quasi quasi pretendete ch’io
vi lodi e vi ringrazi, quando ne avete profittato un pochino.
 Santa Lucia

Richiamo un ricordo molto, molto lontano. Forse il più lontano; forse

la prima delle storie del nonno, che io abbia capita, e che mi sia
rimasta in mente.
Era un inverno rigido.
Sento ancora l’impressione assiderante che provavo uscendo di
casa il mattino alle otto per andare alla scuola; sento il soffio d’aria
diaccia che mi entrava nel collo, e mi faceva l’effetto di una doccia.
Nella mia piccola città di provincia, a Novara, non c’erano, come
nelle grandi città, gli omnibus che abbreviassero le strade.
Bisognava andar sempre a piedi, a meno d’esser signori da
carrozza; e questo non era il caso mio.
Mia sorella era in collegio; c’era entrata appunto quell’anno.
Mio fratello frequentava, come me, le scuole elementari municipali;
ma le sue, le maschili; erano da un’altra parte.
Andavo dunque alla scuola sola, accompagnata dalla cuoca, che era
la nostra unica persona di servizio; una vecchia taciturna.
Tutta la strada, non avendo con chi distrarmi a parlare, a fare il
chiasso, pensavo al freddo; e sebbene avessi il mantellino, mi
pareva di gelare.
C’erano due sorelle, figlie d’una famiglia della borghesia ricca, che
venivano alla scuola con un gran goletto di pelo d’ermellino. Lo si
vedeva biancheggiare da lontano, e formava l’ammirazione di tutta la
scolaresca, dalla prima alla quarta elementare.
Io lo invidiavo appassionatamente.
E, non so perchè, a forza di pensarci, mi ero persuasa di poter aver
in dono una meraviglia simile, per la festa di Santa Lucia.
Perchè nel Novarese, ed a quei tempi, non era a Natale, ma il giorno
di Santa Lucia, il 13 dicembre, che si ricevevano le strenne, nel
panierino, messo appositamente fuori dalla finestra la sera prima. A
Natale si davano le mancia ai giovani dei negozi, le buone feste, i
negozianti di commestibili mandavano le buone feste con un dono,
alle loro pratiche. Ma la strenna dei bimbi nel panierino, la strenna
misteriosa, che si doveva fingere di non sapere da dove venisse, la
strenna soprannaturale, la portava Santa Lucia. Però i bambini furbi
ripetevano una vecchia quartina informe:

Santa Lucia
Mamma mia
Colla borsa del papà
Santa Lucia la vegnirà.

Non so perchè mi tenessi quasi sicura di quella strenna sfarzosa.

Era l’intensità del desiderio, che m’aveva suscitata nel cuore la
temeraria speranza.
Del resto, avevo tanto parlato in casa del bel goletto delle mie
compagne di scuola, che la mamma non poteva ignorare quale
fosse il dono più gradito da suggerire a Santa Lucia per la mia
strenna.
La domenica, quando andai a trovare mia sorella in collegio, le
comunicai la mia grande speranza. E lei si mise subito a calcolare
quale cosa magnifica potrebbe portare Santa Lucia a lei, perchè
potesse stare a confronto di quel goletto che doveva costare tanto
caro, e che lei non poteva avere perchè portava la divisa del
collegio.
La mattina del giorno 13, appena svegliata, e mi svegliai prestissimo,
saltai giù dal letto, ed in pura camicia da notte, coi piedi nudi, corsi a